March for Babies

Tuesday, May 26, 2009

We have done a lot of wishing where Amanda is concerned. First we wished tohave a baby, then we wished for a healthy baby, then we wished that ourpreemie (not healthy) would live (we wished that one a lot), then we wishedthat she would grow and be able to live a normal healthy life. Then wewished she didn't have cancer and once again wished that she would live (wewished that one a lot...again...still). We wish that this miracle girl couldjust have some peace to be a "normal" kid. The thing about wishes is, some come true, and some do not. She will neverbe a normal kid. She will always and forever be the formermicro-preemie/cancer survivor who pulled through. Having watched her gothrough chemo and her surgery and the hours and hours of waiting in thehospital, we wished for something else. We wished we could give hersomething to smile about. We were told that she qualified for theMake-A-Wish program. I admit I RECOILED when this was first suggested. Tome, Make-A-Wish was to provide the last dying wish for a terminally illchild. MY child was not terminal, MY child was going to make it, MY childdidn't need a wish. However, I learned that Make-A-Wish grants wishes tochildren who have been diagnosed with "life threatening" diseases, not justterminal ones. She just made the minimum age of 2-1/2 years and the cancerwas definitely life threatening. I still stalled and hemmed and hawed aboutdoing it. I thought we should let other kids go for their wishes becausethey might need it more, or their families might not be able to afford to dosomething special for their sick child(ren). I thought maybe Amanda wouldqualify only by technicality and that by accepting a wish for her, we wouldbe taking the place of a child more in need who really did qualify. I waswrong. She qualified honorably on all fronts. She was of age and herdiagnosis firm. We were not bending the rules or taking anyone else's place.A wish was available for her and we only had so long to accept her wish orshe would lose the opportunity. I hesitated again, thinking about the money.Make-A-Wish is completely run by donated money and resources. If we took awish, that was money taken away from someone else's wish. The social workerat the hospital put these worries to rest for me by saying, "If you're thatworried about it, take the wish and make a donation yourself!" Wow! Okthen, let's do it!Many wish kids want to go to Disney, and this is the first question asked bymost people when they hear we are participating in the Make-A-Wish program.This is such a common request that Disney World has a separate areaespecially for Wish children and their families. Amanda however would not beable to distinguish Mickey Mouse from Scooby-Doo so Disney was not areasonable wish, especially at this young age. What would give her the MOSTjoy? The biggest smile we could hope for? What had gotten us through thosedays and nights in the hospital? ELMO! We wished for Amanda to go to theSesame Street studios in New York to see the actual Sesame Street and meetElmo and as many other characters from the show as possible. The referralwas made, the ball has been set in motion, they are working on granting thiswish. (Whee! A trip to New York!!!! Mommy is going to be more giddy thanAmanda on this one.) They told us to expect travel to happen sometime nextspring. STILL totally excited!THEN, last week I received a call from Make-A-Wish of Michigan regardingtheir Wish-A-Mile bike tour. This is their biggest fundraiser of the year. A300-mile bicycle ride from Traverse City down to Chelsea...in three days!(Ouch, my backside hurts just thinking about it.) The day they come throughthe Lansing area they will be having a big awards ceremony/banquet to honortheir sponsors, donors and participants. They want to grant a child's wishthat night, in front of everyone, to show what all of their hard work isfor. They chose Amanda's wish out of the stacks of wishes in the systemright now. They want us to go to the ceremony and present Amanda's wish, tomeet Elmo, as a SURPRISE for her that night. Oh. My. Gosh.!!!!! Super Pandawill be in the spotlight of Make-A-Wish of Michigan! They cannot guaranteeto get Elmo there that night, but they will try very hard. They will "pullout all the stops" to make it happen. Our girl, our super-hero, will inspirepeople to give to this most noble cause and show others what a positiveattitude can do when faced with the most horrible circumstances imaginable.Super Panda the Super Star keeps getting bigger and brighter leaving me towonder, what in the world could happen next?

Our Dear Amanda is fighting Hepatoblastoma. Her best friend and bodyguard is a stuffed Lion named Meow. He keeps her safe even when Mommy and Daddy make her do things she does not want to do. This is our journey through treatment to the light at the end of the tunnel.

Manda and Meow

Words to Live By

"It isn't brave if you aren't scared."-From the movie Bounce

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow."- Mary Anne Radmacher